In shock UPSC IIIC diagnosis (Incomplete Staging) Update

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  • Soup52
    Soup52 Member Posts: 908 Member
    #42
    rcdeman said:

    Hi Soup, 

    Hi Soup, 

    Can I ask if you had vaginal brachytherapy?

    Yes, I had 3 vaginal

    Yes, I had 3 vaginal brachytherapy one week apart for each after I had external radiation. Unfortunatel, for me it was quite an unpleasant experience. I know for many it wasn't like this, but for me it was painful + my radiation oncologist has terrible bedside manner which didn't help. I'm sorry to be negative about it, but I was willing to do anything to get the cancer And have a longer survival time.

  • SettledSue
    SettledSue Member Posts: 55 Member
    #43
    Chest X-ray

    Rebecca, you have gotten a lot of great advice here. One question I have about your Mom's situation was whether she had a chest x-Ray before surgery. I'm not sure whether that would show a metastasis to the lungs. That might be a question for her doctor.

    I have another Grade 3 cancer, clear cell. I have had chemo and radiation, both internal and external and have no evidence of disease over four years after my surgery. I now get a CT scan once a year.

    Sue

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited September 2016 #44
    SettledSue said:

    Chest X-ray

    Rebecca, you have gotten a lot of great advice here. One question I have about your Mom's situation was whether she had a chest x-Ray before surgery. I'm not sure whether that would show a metastasis to the lungs. That might be a question for her doctor.

    I have another Grade 3 cancer, clear cell. I have had chemo and radiation, both internal and external and have no evidence of disease over four years after my surgery. I now get a CT scan once a year.

    Sue

    Thank you for your story. It

    Thank you for your story. It gives me hope. I am not really sure what the difference between Clear Cell and UPSC is, but I am very happy that you've been in remission for 4 years.

    Best wishes to your continued health!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited September 2016 #45
    Soup52 said:

    Yes, I had 3 vaginal

    Yes, I had 3 vaginal brachytherapy one week apart for each after I had external radiation. Unfortunatel, for me it was quite an unpleasant experience. I know for many it wasn't like this, but for me it was painful + my radiation oncologist has terrible bedside manner which didn't help. I'm sorry to be negative about it, but I was willing to do anything to get the cancer And have a longer survival time.

    Hey Soup,

    Hey Soup,

    Just want to say that posting your experience isn't being negative. Some of us tolerated the treatments better than others. The whole point of providing how things impacted us, is so that others can see what might happen. None of this is/was easy. But, like you said... you do what you can to have a long(er) life.

    I also took the approach to do whatever the doctors suggested. For me, that was chemo and brachytherapy. I'm just about 9 months out from chemo and 8 months out from radiation. I'm glad I had the treatments. While I continue to heal - still some neuropathy in my feet and legs; I am getting closer to normal every day. Waking up happy and healthy each day was certainly worth the hard times.

    Love and Hugs,

    Cindi

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited September 2016 #46
    survivingsu said:

    Disregard the stats!

    My advice is to disregard the stats and take things one step at a time.  I had small-cell undifferentiated carcinoma in 2009 and the stats were very dismal, some online studies indicating only a 2% survival after 5 years.  I'm glad I didn't read that until well after treatment!  The on-line stuff is out of date, and doesn't account for the individual and the latest expertise/technology/skills.

    One step at a time.  :0)

     

    Wow, you are definitely a

    Wow, you are definitely a survivor, survivingsu. I am unsure what the difference between small-cell undifferentiated carcinoma and UPSC is, but they both sound like it's the rarer more aggressive kind. Were you diagnosed at a late stage?

    Asking for your prayers!
    Rebecca

  • rcdeman
    rcdeman Member Posts: 263 Member
    #47
    Update on Mom and Questions

    I have a short update and some questions:

    Update:
    So I went with my mom to the appointment with the gyn/onc today. Basically, he admitted that her staging is incomplete because he did not remove the omentum and para-aortic lymph nodes. This means it's possible that she could be Stage IV and not even know it. :/ I'm very unhappy about this, but I what's done is done, and we must go onto do what's best for her. So, the plan right now is to get a PET/CT scan done (approval will take 3 weeks, he says), and based on what the scans show, we would either proceed to:

    1) If there are visible spots of cancer spreading that can be surgically removed, a second surgery will be performed before her chemotherapy treatment,
    2) If there are no visible spots of cancer in the scans, we can go straight to chemo,
    or
    3) The worst case scenario, the cancer has spread beyond the point of surgery, in which we would just proceed to chemo.

    I am praying for number 2, because then she won't need to suffer another surgery which would delay her chemo treatment as well as having to recover from a second surgery.

    That being said, the doctor wants her to heal up a bit more from her hysterectomy a bit more before doing proceeding on to the next step. He says we will have to wait about 6 weeks after her first surgery before we can go on to anything else. Meanwhile, he'll be referring us to the medical oncologist to discuss chemotherapy treatment after PET/CT scan.

    Okay, here are my questions:
    1) How long did it take you guys to heal up from your hysterectomy?
    2) And how long did you have to wait before you went onto the next treatment step (whether it be chemo, RT, or another surgical procedure)?
    3) And finally, how long did it take your insurance to approve your PET/CT scan?

    Thanks all! Still need your prayers that during these next weeks the cancer hasn't metastasized anywhere and is contained.

    Rebecca

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited September 2016 #48
    Chemo after surgery

    We waited about 5 weeks after my surgery to start chemo. You want to be pretty well healed. I went to Italy 3 weeks after my suurgery.  

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited September 2016 #49
    Healed up pretty quickly

    I was back on the dance floor 3 weeks after surgery, (and I did overdo a bit).  I was pretty well recovered by week 5-6. 

    I started chemo 5 weeks after surgery.  I had had a scan prior to surgery, so we knew there were no other tumors.

    Since I belong to an HMO, I didn't have to deal with the insurance thing.  My pre-surgery scan was scheduled a week after diagnosis.

    BTW, several women, myself included, noticed a big improvement in the way we felt post-surgery between weeks 2 and 3.  That might be encouraging for your mom.

  • rcdeman
    rcdeman Member Posts: 263 Member
    #50
    Editgrl said:

    Healed up pretty quickly

    I was back on the dance floor 3 weeks after surgery, (and I did overdo a bit).  I was pretty well recovered by week 5-6. 

    I started chemo 5 weeks after surgery.  I had had a scan prior to surgery, so we knew there were no other tumors.

    Since I belong to an HMO, I didn't have to deal with the insurance thing.  My pre-surgery scan was scheduled a week after diagnosis.

    BTW, several women, myself included, noticed a big improvement in the way we felt post-surgery between weeks 2 and 3.  That might be encouraging for your mom.

    Thanks Chris! This is good to

    Thanks Chris! This is good to know.

    My mom also has HMO, but things have been quite persistently unsatisfactory and there has already been a lot of intervention on our part to hurry pending approvals along. Take for instance her first surgical procedure (hysterectomy). It's actually scheduled to be performed this coming week due to the long approval process. Not satisfied with how slow things were taking as we wanted her surgery ASAP (and I'm glad we did since her cancer is an aggressive one), we went took her to the ER to bypass the approval and the scheduling of the HMO. Because of that, she was able to get her hysterectomy earlier on 8/31/16 rather than this week.

    I'm glad that most women are feeling a lot better on week 2 and 3. This is week 2 for her, and she still feeling abdomen discomfort and bloatedness. She is unable to eat much and feels distended much of the day. It was even painful and extremely tiring for her taking a simple shower, so she has skipped several times.

    How long did it take for your to see your medical oncologist after surgery to discuss chemo treatment options?

    Thank you!
    Rebecca

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited September 2016 #51
    CheeseQueen57 said:

    Chemo after surgery

    We waited about 5 weeks after my surgery to start chemo. You want to be pretty well healed. I went to Italy 3 weeks after my suurgery.  

    Wow, alright! Was it taxing

    Wow, alright! Was it taxing on you to go on vacation so soon after surgery?

    And how long did it take for you to see your medical oncologist to discuss chemo treatmnet options?

    Thanks!
    Rebecca

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #52
    http://csn.cancer.org/node

    http://csn.cancer.org/node/295717

     

    RC - Check out this thread. Chris and I documented our post hysterectomy experience. It may give you a better idea on a timeline for your Mom... Hope it helps... :-)

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited September 2016 #53
    rcdeman said:

    Thanks Chris! This is good to

    Thanks Chris! This is good to know.

    My mom also has HMO, but things have been quite persistently unsatisfactory and there has already been a lot of intervention on our part to hurry pending approvals along. Take for instance her first surgical procedure (hysterectomy). It's actually scheduled to be performed this coming week due to the long approval process. Not satisfied with how slow things were taking as we wanted her surgery ASAP (and I'm glad we did since her cancer is an aggressive one), we went took her to the ER to bypass the approval and the scheduling of the HMO. Because of that, she was able to get her hysterectomy earlier on 8/31/16 rather than this week.

    I'm glad that most women are feeling a lot better on week 2 and 3. This is week 2 for her, and she still feeling abdomen discomfort and bloatedness. She is unable to eat much and feels distended much of the day. It was even painful and extremely tiring for her taking a simple shower, so she has skipped several times.

    How long did it take for your to see your medical oncologist after surgery to discuss chemo treatment options?

    Thank you!
    Rebecca

    It was 4 weeks

    My first appointment was set for me by my gyn/onc.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #54
    Surgery Recovery

    I saw the medical oncologist about 3 weeks post surgery. That's when we decided it was okay for me to take a pre planned 8 day vacation to Italy before starting my chemo. I was a little bit tired and wore support hose and took a baby aspirin to avoid blood clots on the flights, had a wheelchair at the airport, but I had the time of my life and it helped me get ready for chemo. I'm so glad we went. I started feeling significantly better at 3 weeks and I had DaVinci but the ended up doing total abdominal because of extent of the cancer. 

  • rcdeman
    rcdeman Member Posts: 263 Member
    #55
    TeddyandBears_Mom said:

    http://csn.cancer.org/node

    http://csn.cancer.org/node/295717

     

    RC - Check out this thread. Chris and I documented our post hysterectomy experience. It may give you a better idea on a timeline for your Mom... Hope it helps... :-)

    Thanks! I've already

    Thanks! I've already bookmarked this thread. I've already taken a look at it, but I haven't paid attention to the dating and stuff yet. Will definitely use it as a reference when my mom actually starts her chemo sessions.

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited September 2016 #56
    CheeseQueen57 said:

    Surgery Recovery

    I saw the medical oncologist about 3 weeks post surgery. That's when we decided it was okay for me to take a pre planned 8 day vacation to Italy before starting my chemo. I was a little bit tired and wore support hose and took a baby aspirin to avoid blood clots on the flights, had a wheelchair at the airport, but I had the time of my life and it helped me get ready for chemo. I'm so glad we went. I started feeling significantly better at 3 weeks and I had DaVinci but the ended up doing total abdominal because of extent of the cancer. 

    I'm glad you spent your time

    I'm glad you spent your time so happily after surgery and before chemo. If my mom feels up to it in a week, I may just take her somewhere to travel as well. I think once chemo treatment starts, it's harder to find the time and energy to travel.

    Thanks for letting me know!

  • rcdeman
    rcdeman Member Posts: 263 Member
    #57
    Editgrl said:

    It was 4 weeks

    My first appointment was set for me by my gyn/onc.

    That's nice! Looks like

    That's nice! Looks like everything was already planned for you, which is a big help I'm sure, considering what we're dealing with.

    I'm not sure why this isn't the case for us. It looks like after we get an approval letter in the mail, we have to take our own initiative to set an appointment with the medical oncologist. The gyn/onc told us to call him if they refuse to set an appointment with us. What's changed about HMO? :/

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #58
    rcdeman said:

    Thanks! I've already

    Thanks! I've already bookmarked this thread. I've already taken a look at it, but I haven't paid attention to the dating and stuff yet. Will definitely use it as a reference when my mom actually starts her chemo sessions.

    RC, the above thread isn't

    RC, the above thread isn't the chemo thread. This one talks about the hysterectomy and our post surgery issues. I thought it would be helpful since you were asking about healing time.

  • rcdeman
    rcdeman Member Posts: 263 Member
    #59
    TeddyandBears_Mom said:

    RC, the above thread isn't

    RC, the above thread isn't the chemo thread. This one talks about the hysterectomy and our post surgery issues. I thought it would be helpful since you were asking about healing time.

    Oh you're right! Whoops, I

    Oh you're right! Whoops, I remember you linking a chemo thread to me before, so I thought this was the same thing. Thanks! I'm reading through this thread now. :)

    Thank you!
    Rebecca

  • SettledSue
    SettledSue Member Posts: 55 Member
    edited September 2016 #60
    Brachytherapy

    I had my first brachytherapy (internal radiation) five weeks after surgery. My first chemo was around two months after surgery.

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited September 2016 #61
    rcdeman said:

    I'm glad you spent your time

    I'm glad you spent your time so happily after surgery and before chemo. If my mom feels up to it in a week, I may just take her somewhere to travel as well. I think once chemo treatment starts, it's harder to find the time and energy to travel.

    Thanks for letting me know!

    Actually

    You may well have time and energy.  It really depends on how your mom responds to treatment.  In my case, and with many of the others here, the chemo sessions were once every 3 weeks.  I had a few days in the first week that I didn't really feel like doing much.  But after that, I got out and I did several weekend trips during chemo.  It's great to get away and feel somewhat "normal" during that time and if your mom is physically able to, it's good mentally and emotionally as well.

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